October 15, 2007. The script for Peter’s synthetic B12 injections arrive today. The geneticist has been trying to track down a drug manufacturing company to make this formulation for the past four months. In June, we learned that Peter lacks the enzyme necessary to metabolize B12, which means the vitamin can’t get into his cells, a genetic deficiency which negatively impacts normal brain development. The kind of B12 he’ll be receiving relies on a different enzyme for metabolism. If we see improvement, he’ll need these shots every other day for the rest of his life. Although I’m excited over the prospect, however slim, of Peter’s autistic features and brain function improving, I’m equally wary that the injections will turn out to be another dead end. There have been so many dead ends in our quest to improve our son’s conditions and I fear the cumulative effect of lost hopes. Later in the day I tell Peter what’s in store and as I focus on how he’s handling the news, Sophie begins to cry. “Don’t do this to my brother,” she says. “Please don’t do it, Mom.” I have never loved my daughter more than I do in this moment. There are so many things wrong in our household, so many days gone awry that end in tears or angry outbursts, yet this tiny five-year old reminds me that first and foremost, we are family, and that we love each other. Peter may be relentless in his efforts to upset and tease Sophie, but he is her brother and in this perceived time of crisis, his offenses slip easily from her mind in favor of solidarity. Sophie reminds me of the need to shed my own resentment and anger, pestilent feelings that too often color how I view, and undoubtedly on occasion treat, Peter. I pull both my children close to me and kiss the tops of their heads. I do my best to explain why Peter needs these shots and how they might help. Then I silently pray my son forgives me for subjecting him to yet more physical assault. I thank God for allowing Sophie to instruct me in the art of unconditional love and I pledge to hold against my heart the gift of her lesson.

Chapter 22: From Albany to Virginia

Our work continued with Sue over the course of the next few months. Peter’s transformation on Risperdal was nothing short of miraculous. Although not a magic bullet, the tantrums, the toileting escapades, and much of the other unmanageable behaviors either diminished significantly or disappeared altogether. Each night I drifted off silently thanking the pharmaceutical company that manufactures those tiny round pills so that parents like Pat and me might occasionally sleep with both eyes closed.

The other noticeable difference had to do with Peter’s speech. Despite speech and language therapy twice weekly, which had begun six months or so earlier, we hadn’t noticed much improvement before Risperdal. I don’t know why the medication helps so many autistic kids and other children with autistic-like brain disorders, but there’s no doubt it works. The medicine didn’t bring him out of his fog entirely, but the change was like the difference between a fog so thick you can’t see your own hand in front of your face and one where visibility is low but its still safe, let’s say, to drive. To us it felt like a clear, crisp fall day, the kind of day where a steady stream of blowing leaves filters and purifies the air. Without warning, pronouns began to show up, as did plurals and even a few conjunctives.

Spring 2006

He was becoming another child, at least for a while. Sue began making small but noteworthy inroads, optimism returned, and I found myself anxiously awaiting each Tuesday so that Peter and I could make the trek to Albany and learn something new I could then take home and practice. But then something happened and the medicine seemed to stop working, not all at once but slowly, like a slithering snake. Over a period of weeks the aggressive edginess returned, the dizzying mood swings, the rages that seemed to last for hours and that left Pat and me feeling like we’d been slowly dismembered by a rabid forest animal.

This unexpected downturn lead to more drugs, and sometimes different drugs, though nothing brought back the window of opportunity Peter experienced during those first virgin weeks on Risperdal. We gave Ritilin a try, but stopped after watching our son sob uncontrollably for three days. Then we added Risperdal back but at a higher dosage. The unwanted behaviors only escalated. We’ve since learned the Risperdal dose that works best for Peter is an extremely low one, .5 mg twice a day. So far age and growth have not altered this fact, though we have tinkered with dosages now and again, just to make sure.

Pat and I knew that yielding to the temptation offered by medication would be a tricky proposition, but we had no idea of the emotional rollercoaster it entailed, both for our child and us. We were confused, frustrated and angry. We weren’t happy with the prescribing nurse practitioner because every time we went to see her she asked the same solitary question: “What behaviors are you trying to control?” She barely ever spoke to Peter and she certainly didn’t interact with him or make any effort to evaluate or understand his problems. To us she seemed nothing more than a dispensary. She was also not accessible by telephone. Every single tinker of medication, every little report of a possible side effect, or change of dose required a $75 cash-only, 5-7 minute office visit, with Peter in tow. I found myself making the trip to Albany two or three times a week. It was ridiculous, expensive, time-consuming, and entirely unfair to Peter, who once we arrived, was completely ignored.

Sue was sympathetic when we shared our complaints, but she also offered a gentle reality check. There are very few child psychiatrists within a 90-mile radius of where we live and waiting lists can reach well into the following year. Second, medicating children for psychological disorders is an unpredictable business, even more so than it is with adults. This was especially true in Peter’s case because we had no family history and no confirmed diagnoses from which to make at least a few education guesses.

Spring 2006

So we kept plugging along, returning eventually to our original dose of Risperdal, but without much forward progress. For instance, during one session I shared with Sue that Peter threw a stone directly at Sophie’s head, and so then he and Sue reenacted the incident using rubber frogs on the floor of her office. Although she did her best to tease from our son a rudimentary sense of empathy, responsibility, and cause and effect, in the end, her efforts proved largely fruitless. Peter showed no understanding or interest in what she was trying to accomplish and he often behaved sarcastically, certainly passive-aggressively, toward her. Before long, it was clear we had reached another stalemate and Sue finally said as much one afternoon. I knew it too but our sessions, though frustrating in terms of Peter’s progress, benefited me tremendously. I wasn’t ready to give her up, even if she knew it was time to turn Peter over to someone more specialized. In some ways, over the course of our year together, I had become the patient.

I remember Sue smiling sagely when I brought this to her attention. She implicitly understood my struggles in a way no one else besides Pat ever could have imagined. But we weren’t there for me, at least officially. Helping Peter was the goal and primary purpose. “I think his problems are organic,” Sue broached. “I think there’s some physical damage. Neurological. His responses are the same no matter what we do. It just doesn’t add up.” I knew in my mind if not my heart that I was hearing the truth, so I nodded slightly. “It’s beyond what I can do,” she whispered. “Let me make some calls and see what I can come up.”

When we left that afternoon I hugged Sue goodbye and then ambled out of her office with Peter’s hand firmly gripped in mine. When I let go, he ran to push the button on the elevator, something he still enjoys doing, and my stomach sunk as we descended to the ground floor, knowing full well the two of us were on our own again, flung lovingly, but irrevocably, from the comfort of Sue’s nest.

While I waited for Sue to make her calls, I began making some of my own. My first was to Jane Aronson, our trusted ally in what had proved to date a very bumpy adoption journey. I had made this call before, without much to show for it, but I knew I needed to try again. Sometime after we had started vocalizing our concerns about Peter, but while we were still in the stage where everyone kept advising us “to give it time,” I sent an email to Dr. Aronson, asking for help. She suggested we visit a therapist in the city, and so we made an appointment.

Despite hearing the problem was Peter, the therapist asked to meet us alone, as a couple. So we arranged aftercare one day at the kids’ preschool and dutifully drove into New York for our childless appointment. The therapist was stylishly dressed, older, and I distinctly remember her asking whether we’d like some iced tea. I smiled because the offer was so Southern; in fact, I don’t think anyone had ever offered me iced tea since moving up north. After 30 minutes or so of extracting our personal histories, she announced that our problems with Peter, and mine in particular, were a direct result of my not having sufficiently grieved over my miscarriages and infertility, as well as the loss of Ben, the baby we turned down in Russia.

I recall scrambling for the elevator, speechless and in shock, as Pat stayed behind to scribble out a hefty personal check. We were both fairly quiet in the car for the first few minutes but then Pat slammed his hands on the steering wheel. “That was complete bullshit!” he screamed. “My God, did it not even occur to her that we’re doing fine with Sophie?” I began crying after that but not because his outburst upset me but rather because it gave me permission to release all the pent-up confusion and frustration I’d been holding inside since that woman with her pitcher of iced tea first opened her mouth. Needless to say, we chose against scheduling a second appointment. Pat drove home with my head resting in his lap, where the tears subsided in favor of the calming warmth his presence most always offers me.

Luckily for us, enough time had passed since then that I was willing to give Dr. Aronson’s recommendations a second chance. After all, how could she know the therapist she referred us to would suggest I was the one interfering with Peter’s attachment and generally causing all our family’s problems? And besides, by that juncture, we’d spent enough time with Sue, a known and respected expert in the field of attachment, to know in our hearts, once and for all, that Peter’s problems were bigger than us, and that neither of us had caused them.

So the second time I called Dr. Aronson’s office to get the name of someone to whom we might bring Peter, she didn’t mince words. “It’s time to see my friend Ron Federici. He’s the best, Mary. It sounds like this is a serious problem. I’ll call him first to see if he can get you in sooner than later. Give me a day or two, then call yourself. In the meantime, look him up on the web.”

True to her word, Dr. Aronson made her phone calls to advocate on our behalves, and we were able to plan a trip to Virginia to see Dr. Federici within three weeks. As far as I can tell, her intervention saved us about four or five months of waiting for an available appointment, and therefore further decline.

Ronald Federici is a board certified clinical neuropsychologist with a host of other impressive credentials too numerous to list. He’s also the adoptive father of seven children, many of whom were rescued from Romanian orphanages in the 1980s and early 90s. International adoption, and more specifically, the developmental, behavioral, and emotional issues that plague orphanage children, which in turn wreak havoc on the grossly unprepared lives of their new, mostly well-intended parents, is both his business and passion. The prospect of meeting this man, and having him examine our son, felt both exciting and worrisome. After reviewing the materials on his website, and watching some of the video clips from various interviews and public appearances, it was clear this man knew his business. He also seemed tough, a real roll up the sleeves kind of guy. Though I couldn’t predict exactly what he would say when our visit was through, I knew it’d be substantial, as well as life-altering. In the private chambers of my heart, where my deepest fears are lodged, I’d always felt there was something wrong with Peter, something serious and not amenable to an easy fix.

The waiting period flew by because it’s not easy to prepare for a trip to see Dr. Federici. The amount of paperwork to be filled out rivaled what I imagine an IRS audit process requires. But we did it. The extensive background questionnaire, the rating scales, the teacher forms, and copies of all past evaluations. The list goes on and on but I understood then and still do why he insists on being able to study the child’s entire “knowable” past from every possible angle. With kids from Russia, and I’m sure other countries as well, there is no prenatal or birth history, no family medical history, no history of any kind prior to adoption. Even vaccination records, which some orphanages provide, are suspect and which is why many parents opt to revaccinate their children once in the United States.

But none of this bothered me. Like filling out the droves of pre-adoption paperwork, I was very motivated, almost as though I was jump-starting the engine that would lead us toward our son’s restored health.. The only real difficult part of Dr. Federici’s pre-appointment requirements had to do with his position on medication. He feels that children should be evaluated, whenever possible, without benefit of behavioral medications in order to establish both a baseline and to accurately identify any underlying organic or psychological conditions. Although we agreed to this prerequisite, tapering Peter off Risperdal was no romp in the park.

I think after a time, most parents with children on behavior medications often start questioning whether the meds are still working. However, all any of us have to do to reassure ourselves otherwise is to slowly and properly withdraw the medication(s) and observe what happens. It’s not a pretty process, at least it wasn’t with our son, and it was painful to watch him backtrack. Every day a few more of the unbearable behaviors returned, some of which we’d almost managed to forget: playing with poop, “da tee tee da da”, and spinning like a top on amphetamines, just to name a few. By the time we were ready to leave for our 5-day sojourn, Pat and I were pulling our hair out.

But as when we started working with Sue, there was still something invigorating, even hopeful, about embarking on this mission to Virginia. I imagine it’s a little like fearing you might have cancer but are too fearful to visit the doctor. Denying reality has its drawbacks and almost always backfires. There can be great relief in finally confronting the truth and then formulating a plan for addressing it. I felt like I’d much rather go down trying then continue to fool ourselves about the seriousness of our problems with Peter. Cancer can be treated, and more and more often cured, with proper intervention. Despite real trepidation, I was hoping the same held true for our son.

And we wouldn’t be traveling alone. By this time we had convinced Pat’s mother to move from West Palm Beach back to New York to be closer to us, her other son John, and her five grandchildren, old and new. We bought a little house about a mile from ours and Pat used part of it as his office, which worked out perfectly. His mom had company and Pat had a quiet place to work, away from the noise and commotion of our bustling household.

Peter, Sophie & Grandma (Christmas 2007)

Despite her age (81 at the time), Pat’s mom insisted on taking the 6-hour trip with us to watch Sophie during the first day of neuropsychological testing and participate with the rest of us in the subsequent 2 days of behavior intervention. Pat’s mother has this amazing ability to keep the two of us sane, and perhaps because we try harder to achieve some balance toward the kids when she’s with us, we always seem happier as a family. She’s somehow able to deflate our ever-ballooning feelings of despair and exasperation with her wit, advice and example. Though she loves our kids completely, she worries about their futures as much as we do, especially Peter’s. But she also accepts their pasts as part of who they are, and never seems to take their behaviors personally. If she were only 50 years younger, I believe she would be the ideal candidate for parenting alcohol exposed, attachment-disordered children. As it is, she’s a Godsend in my life.

When we left early the day before the evaluation, car packed, DVD player poised for Finding Nemo, and the cooler filled with snacks and drinks, it almost felt like we were leaving for vacation. Poor Grandma, who’s tiny even by Sicilian standards, was sandwiched in the back between Sophie and Peter, who were both still in car seats. It was a long trip, to be sure, but we arrived early enough to get situated in our rooms and settled. The hotel unapologetically flubbed our reservations and gave away the adjoining rooms we were promised. So Pat wound up sleeping with Peter in one room and I stayed with Sophie in the other. Grandma deserved her own room.

Late that afternoon we walked around Fairfax, which is a beautiful, historic city dating back to the 1700s and within shouting distance of the District of Columbia. We chose what looked like a kid friendly restaurant and enjoyed a decent, if not spectacular, seafood dinner. Peter made himself vomit at the table, but luckily not until we were mostly finished. Thinking he was sick, the waitress was sympathetic. As is usually the case with those who briefly peer into our lives, she undoubtedly failed to understand, much less appreciate, why we left in a disgusted, embarrassed rush.

After the dinner that was cut short, we walked until we found a big green space where the kids could run off some energy before going to bed. Because we wanted Peter well rested for the next day, both kids were tucked in by 7:45. I read for a while and then Pat and I emailed back and forth from our laptops, neither of us savvy enough to have figured out “live chat” or Facebook. In a way it was a little romantic, we’d never been separated in a hotel before, and each time I clicked the send button I’d wait anxiously for his cute, sometimes flirty replies.

Meeting Dr. Federici the next morning was an unforgettable experience. His office was nondescript, very low key, the way I think all offices of this type should be, but as soon as he walked into the waiting area the energy level increased tenfold. Tall and a little lanky, he possesses this booming, fast-clipped voice that leaves no doubt about who’s in charge. We have taken our son to see Dr. Federici three times, but on this first visit he spent 45 minutes or so with Pat and I before he took Peter for testing. He wanted to hear our story, our adoption history, including the foul-up with the baby we called Ben and our decision not to move forward with that adoption.

While in Russia, the orphanage director told us that Peter’s teenage mother came to visit him 3 or 4 times and brought an apple, but then stopped coming. When we got to that part of our story, Dr. Federici interrupted and said, “I know – the mother brought him an apple.” Pat and I just looked at each other. Despair and astonishment swirled inside our foolish brains with sickening synchronicity. How could we have been so naïve as to accept as truth this pitiful, rote attempt on the part of the Russians to prove a bond, a connection, to offer a hint of reassuring hope that someone nurtured and loved our child as an infant? They must think Americans terribly stupid, and at that moment, I wasn’t in a position to dispel any myths.

When we finished unraveling our tale, Dr. Federici paused for a minute, leaned toward us and said in a softer, more solemn voice. “Let’s get this mess figured out.” Standing up, he shook our hands, exchanged Italian niceties with Pat’s mother, and then handed us a stack of additional forms and questionnaires to fill out while we waited. We were to take Peter with us at lunchtime and return him for more testing in the afternoon. Busy banging something on the floor, Peter failed to answer the first time Dr. Federici called his name, which I found surprising because I nearly sprang to attention at the sound of his commanding tone, and so did Grandma and Sophie. He didn’t bother asking a second time. Instead, he leaned over, took Peter by both hands and without a hint of roughness pulled him firmly to his feet. “It’s time to come with me now, Peter,” he said. I bit my lip as I watched them turn the corner. Our son never even looked back.

Hand-Flapping (Fall 2008)

Although I had a sense of what lay ahead, at least partially, the unknown diagnoses we were on the brink of receiving were terrifying to contemplate. Autism was already a key suspect because of the previous questionnaires we had answered. I had been asking “experts” for two years why Peter flapped his hands, walked on his toes, repeated his name, pulled his toys apart, was often unresponsive, tantrumed excessively, and spun in circles. I still don’t understand why, up until then, the various professionals in our lives couldn’t see the obvious because every single one of Peter’s puzzling behaviors, which he exhibited routinely, was on the parent autism questionnaire. It was abundantly clear to me by the time we reached Dr. Federici’s office that our Russian born son was somewhere on the spectrum, so I was prepared for that. I was also prepared for a diagnosis of alcohol exposure, if not full-blown FAS. Jane Aronson had primed us for that culprit within ten days of our bringing Peter and Sophie home.

When the testing was through, Peter emerged bouncing and toe walking, with an impish little smirk on his face. We had brought plenty of toys and books to occupy Sophie during the long day but Peter simply walked over to the stack of adult magazines and started turning the pages to Newsweek robotically. Dr. Federici motioned us into a conference room, a tiny bit exacerbated, maybe a little amused, and definitely shaking his head.

“The little bugger snuck one over on me,” he said with a hint of disbelief. “You’ve got a sneaky one, there. When we were taking a break, and I saw he was doing a puzzle, I took the chance to use the restroom. I was gone thirty seconds, no more. I swear.” By this point I was fairly nervous. Looking over, I saw Pat squirming in his seat. Whatever happened was not good. “And somehow he managed to destroy my office!”

I remember thinking the damage must be substantial for the unshakeable Dr. Federici to sound so astonished. “In less then a minute, he took my letter opener and slashed my leather desk chair, he pulled every single plug out of the socket, swept my desk clear, he did something to my. . .” and then his voice trailed off. I didn’t know what to say. Either did Pat. We’d become mutes glued to our chairs. Horrified, I envisioned getting slapped, unceremoniously, with a damage bill for $10,000 and a concurrent invitation to never return.

“I gotta give it to him,” he finally continued. Then he looked up, shook his head, and though I can’t be certain, I think he smiled. He must have read our thoughts. “It’s okay, guys. My fault. I got fooled. By a 4-year old. Honestly, it’s a good lesson. I didn’t think it was possible anymore.”

Although relieved we wouldn’t be applying for another equity line of credit, it was unsettling to hear that of all the thousands of children he’d seen, ours was the one to pull a fast one over him. I felt like I needed to apologize, profusely, but as soon as I started sputtering, he waved me off. “Listen. That’s over. Here’s what matters: I know what to do. There’s good news and there’s bad news.” He paused to make sure we were listening. Taking his cue, I did my best to erase the image in mind of Peter slashing a leather chair, but it wasn’t easy. “Okay. I’m gonna start with the bad.”

So we listened and took notes. Peter was autistic. Although his behaviors fell squarely in the moderate range of the spectrum, Dr. Federici felt other factors, including his early institutionalization, were causal factors for his symptoms. He therefore believed the most appropriate diagnosis was “high-functioning autism” or PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified. Seems like a catch-all, and maybe it is, but what it really means is that the person isn’t “classically autistic” but also is too impaired, including intellectually, to meet the criteria for a diagnosis of Asperger’s Syndrome. On the spectrum, PDD-NOS falls more or less in the middle. This was not good news, of course, but Dr. Federici made clear that autism was the least of our problems. This was hardly a comforting statement to hear right after being told our child was autistic.

Peter also had full-blown Fetal Alcohol Syndrome, his symptoms and impairments falling within the mild to moderately affected range. This news, though not surprising, was particularly difficult to hear. It was the one possibility that truly terrified Pat and I since the onset of our adoption journey. We tried so diligently to protect ourselves, as well as our future family, against this devastating condition but now we knew our efforts had failed. “But it could be worse,” Dr. Federici jumped in as he watched our faces fall. “Most kids I see with FAS are retarded. Peter’s not. His IQ is low, but in the low average range. And with the right help, I’m certain we can raise it. The autistic traits too – they’ll improve. The autism is secondary, like a side effect – to both his early institutionalization and the FAS. The point is, he can learn. He can improve. Believe me, I often sit in this very seat and tell parents there’s really very little to be done. It’s devastating. But Peter can be helped.”

Outer Banks, NC (June 2007)

I have this horrible problem, or maybe condition, I’m not sure, where my face turns beet red whenever I drink (which I rarely do), get angry, upset, embarrassed, even slightly overheated, or when I feel a migraine coming. Since this covers a lot of territory, I’m forever feeling like I look either drunk, sunburned, or on the verge of a coronary. My mother had the same problem so maybe its hereditary. I could feel the heat rising in my face as I took in the news, trying desperately to understand how an IQ of 80, autism and FAS were not such bad things.

Next, he said we should have our son evaluated by a neurologist because he was concerned Peter was having seizures. “Why?” I asked, puzzled. No one had ever suggested this before. “Because of the staring spells – lots of them. Also because most of these kids I see, like Peter, have abnormal EEG findings that need and respond to treatment. And treatment means improvement.” Then he took a breath, exhaled, and said, “but here’s what really concerns me.”

As my flush spread to the point I could have fried eggs on my face, I looked over to see Pat so slumped into his chair that he looked like he could have faded right into the fabric. How could there possibly be anything worse that what we’d just been told? “What really concerns me,” Dr. Federici continued, “are his dysregulated thought patterns – Peter shows little to no grasp on reality. He doesn’t seem to know what’s real and what isn’t. And he’s almost 5. He should know, at least somewhat.” Then he gave a few specific examples. Honestly I think I’ve blocked them out because try as I may I can’t remember any. One phrase from the written report that followed, however, remains etched forever in my brain: that Peter displays “pseudo-psychotic logic patterns.” Holy Mackerel.

“But couldn’t that just be a developmental thing?” Pat pleaded. After all, Dr. Federici also had told us only a few minutes earlier that despite our son’s low average IQ, he was functioning significantly below his potential. His adaptive IQ, meaning how he was using his intelligence to interact and problem solve in the real world environment, was in the high 50s, which put him squarely in the retarded range.

“No. Significant difference between straight IQ and adaptive IQ always indicates brain damage – which is what we’re dealing with here – Peter has FAS. Maybe heavy metal exposure too. You’re right in that he’s functioning like a much younger child, but my concern about his thought patterns, well, that’s a whole different thing. You’re going to need to keep an eye on that. Keep a journal.” And then he gave us a list of behaviors to watch out for and write down.

Four or five months after our visit to Virginia, I almost hit a deer on the way home one day, with both kids in the car. A little shaken, I pulled over to settle my nerves. “Peter say go button,” he offered. “Make car zoom on air. Flap Flap.” He was referring to something recently we’d watched on Lilo and Stitch, a kids cartoon. He thought I could press a button and make the car hop and fly right over the deer, literally. When I tried explaining, for the zillionth time, how cartoons aren’t real, that lots of things happen in them that can’t happen in real life, he began to tantrum. “Peter fly car. Peter fly car. Mama don’t know. Peter fly car!” So into the journal it went.

By the time we were through with our post-evaluation debriefing, Pat and I were wobbly and on the verge of hallucinating ourselves. In addition to learning our son was autistic, had FAS, possible seizures, and psychotic tendencies, we also learned that he suffered from ADHD, a mood disorder (probably bipolar-type), severe Post-Traumatic Stress Disorder (PTSD), sensory integration dysfunction, severe Attachment Disorder, and a host of learning disabilities across all domains.

When Pat and I lay in our separate hotel rooms that night, thinking our separate thoughts but occasionally emailing each other, we realized our reaction to the day was basically the same, and went something like this: Oh my God! Now what do we do? Are our lives over? Should we dump the kids with family members and disappear into the Alaskan Wilderness? But as our panics waxed and waned, we tried to remind each other that Dr. Federici had a plan that he promised would help our son and return some semblance of normalcy, or at least functionality, to our home.

The next day we arose and met downstairs for breakfast. Sophie was in a foul mood over the thought of spending another day in Dr. Federici’s waiting room, and Peter was on the loose, medication restarted but still incredibly jumpy. I had wanted to switch rooms with Pat so that he didn’t bear the entire brunt of spending every night with Peter, but he characteristically declined the offer. He looked so tired that morning, the kind of fatigue that derives from worry more than sleep deprivation, and I fought back a rush of emotions as I watched my deflated husband shuffle toward our table. I realized right then how angry I was, at Peter, at our situation, at the fact we were spending four days with a neuropsychologist when we should have been enjoying D.C.’s glorious Cherry Blossoms. I was angry at the world, at God, for what felt like perpetual punishment, and all because we wanted a family. Because I wanted a family.

Summer 2007

Pat’s mom sensed the change, the gravity, and as usual intervened. She suggested we finish breakfast quickly and enjoy the morning sun for a few minutes before we left for our appointment, which was day 1 of Behavior Intervention. At this suggestion, Peter began his ceremonial purging at the table but we caught it in time. In no uncertain terms Pat made clear that he would be a very unhappy boy were he to pursue this particular line of sabotage any further. Something in Pat’s eerie tone convinced Peter to stop.

Despite the early hour, the day was already hot and hazy as the D.C. area can be, even in early May. We strolled slowly around a few neatly trimmed blocks. The characteristic brick buildings, with their blooming window boxes and glossy black doors, reminded me how much I enjoy the greater D.C. area. Our leisurely pace felt inconsonant against the hurried gait of business people rushing to catch their trains. I’m sure most, if they even paused to notice, thought us tourists. But tourists we weren’t.

I had the same feeling that morning watching the throngs of people passing that I had in the airport the morning my father died. The news we had received only the day before in Dr. Federici’s office had turned my world upside down, completely, and was as difficult to process and accept as the news of a death in the family. I was envious of these oblivious people, who had ordinary thoughts on their minds, and who neither knew nor cared that our lives were now changed, forever. Theirs was just another day, indistinguishable in all likelihood, from a thousand others. This day for us would be forever frozen in time. Our son was damaged, seriously and permanently. There was no turning back the clock of our lives. We’d have to find a way to move forward. I hoped Dr. Federici was right when he said he could show us the path.

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Of all of your posts to your blog, this one had me in tears almost right from the start. Especially when you were looking for referrals and solutions desperately and meeting with Dr Fedici. I wonder how you do it without completely losing your mind and I feel so desperate *for* you and Pat. It’s hard to know what to write here .. I have never heard of anything that even comes close when it comes to parenting a child and I don’t want to add tritely empathetic and, I imagine for you, common and exasperating platitudes.

You and Pat are both an inspiration to me to be as effective a parent as I can be to my child (once we finally have them!). You read stories in the news, more commonly these days, about parents who take the option of harming or even killing their trying child for much less than anything you describe.

If you ever want to rant and rave (even just once or twice) to a stranger who will listen and won’t judge you (no matter what you say) just to get out your frustration/anger/bewilderment/depression/whatever send me an email and I’ll give you my phone number :)

Kind regards and my sincerest hope for a solution you can live with!
Kim
(Australia)

your beautiful boy… it is at times like this when faith– bigger than our logic– can allay fear and worry. i know you’ve mentioned not being particularly religious, but, my faith, my Catholic faith, is such a source of strength in the face of the unfathomable. it is in knowing that God has a mighty plan and that His love for Peter, for you, for your family, is as immeasurable as the sands of the all the beaches in the world, that comfort can come. that the feeling of needing to have all the answers, to “fix” it all, can be just a tiny bit less burdensome. i am NOT “poo-poo-ing” your experience; not in the least!!! but, when our human-ness is insufficient, faith can be like a hammock of security. bless you and your precious boy.

Thank you so much, Amy. And yes, although I don’t consider myself “religious” in the sense of organized church, I do believe in God, and I do hope and pray for guidance, for surely I could use some! Having said that, I’m glad you find comfort and strength in the Catholic Church. Sometimes I truly wish I could say the same, but I can’t. Be well and enjoy the wknd – Mary :-)

Once again, I am riveted by your writing and so admire you for your candidness and honesty and for sharing with the world the suffering many parents go through silently in a world very ignorant about these things. I had no idea about RAD or FAS though I am highly educated and worked extensively with adopted children from China. In hindsight, one of them clearly had RAD, but I knew nothing about RAD at the time. In hindsight, she might have had FAS too because her lip area did look unusual. But it was unusual in a different way than Peter’s, so who knows.

You said that after Dr. Frederici’s office visit, you were angry at Peter and angry at your situation. Know who I’m most angry at? His birth mother and anyone around her who saw her drinking while pregnant and didn’t try to intervene. I realize that addictions are mental disorders or arise when people try to self-medicate other mental disorders, and maybe she hid it from others or simply refused to stop despite pleas, but it’s not like she was brewing vodka in her apartment. Someone had to sell it to her.

Also, in a previous comment, I had asked if you had had him tested for ADHD and tried to medically treat that. I apologize for making that comment, which probably had you rolling your eyes. I should know by now that you leave no stone unturned for the sake of your son. Since I’m very knowledgeable about ADHD, I hope you don’t mind the upcoming comment. For many ADHD children, a given medication doesn’t work and leads to the emotional side effects that Peter had. But change the medication and tweak the doses just slightly, and it’s a totally different story. Did you play around with the Ritalin dosing or try a medication that’s not in the Ritalin family such as a low dose of Vyvanse or Adderall XR? Ritalin is generally not the first medication to try for ADHD these days.

Unfortunately, while a lot is known about what helps ADHD+ODD kids, and even then it’s a trial and error process for each individual kid which sometimes has to be repeated often as their bodies change, when you throw FAS and RAD into it, the rules may be completely different.

Also, have you tried an anti-psychotic other than Risperdal? Clozapine and olanzapine are statistically more effective at treating childhood-onset psychosis. But when you throw FAS and RAD into it….

Again, I apologize if these comments are annoying–when I need help and the person tells me something I already know and so obviously have looked into, it’s very irritating.

Mary, are you in an online support group for parents of children with RAD and/or FAS? I know a blogger was doing RAD mom buddy match-ups. Maybe the woman who made the pee video knows who that blogger is.

Been in your shoes, done the Dr. F thing. It changed my son’s quality of life and mine as well. I’ve had that long walk home from his office after being told “permanent brain damage.” It was a dark night of the soul. At leat now, through Dr. F’s training in ABA we have a better life. Risperdone has always been the best. My son has exactly the same symptoms as yours-and also ran out of Dr. F’s office while he was on a brief call. He ran out into the highway area——. That got Dr. F’s attn. and helped him see what a safety risk my child is to himself and requires constant vigilant supervision. He saw Dr. F at 4 and is now 5.5. It’s about to go back–and I dread the flight to Virginia.
Kas in TX